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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> west coast doctors http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293915621 Message started by Riverwn on 01/01/11 at 09:00:21

Title: west coast doctors
Post by Riverwn on 01/01/11 at 09:00:21

(Archived from laurasis - original forum)
laurasis
My sister was just diagnosed with aggressive systemic mastocytosis (with a bmb). Is there a doctor on the west coast that understands this disease?
22 April 2009 10:19 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:01:58

(Archived from triciag - original forum)
triciag
If you get the same information twice from me , I'm sorry. I accidently clicked the wrong tab and lost everything. I think there is another member on this Forum thats looking for a dr on the west coast. On www.tmsforacure.com is how I found out about Deborah the founder of this forum. She is the support group leader of the midwest, and I found out by her where I should go in Illinois for help. I emailed a member from the Washington State group support. That was a few days ago, and I havent recieved anything yet. But you might have better luck contacting them. I found some phone numbers on the site.
California: Juanita Anderson 323-930-1954

Washington State: Forrest Hansen 425-827-6366
Tari McKenzie 425-640-8233

Looks like they don't have a support group yet for the state of Oregon. Hopefully you'll be able to contact these members and maybe they'll be able to help you find a Doctor for your sister. If you dont have any luck contacting them, I'm sure Deborah might be able to help.
22 April 2009 11:04 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:04:01

(Archived from jillian - original forum)
jillian
Hi Laurasis, Welcome to the forum. I'm a new member here too and like you I'm trying to find a doc a little closer to me then Boston! I'm in Oregon. Are you or your sister in this area? Who diagnosed her? I'm waiting for the final Bone Marrow results then I think my doc may continue to treat me if the result confirms a mast cell disorder. However I would be his first patient with a mast cell disorder. Otherwise he said he'll have a hard time calling it a mast cell disorder. He said he nor these tests are the final say but didn't feel qualified to diagnose me if the test is not conclusive. It sounds like some of the members on here have gotten a diagnosis from a specialist without conclusive tests. He did start me on Gastrocrom though to see if it would help. I think it just may be helping. I've been on it since Monday. Anyway, good luck with your search. I'll post info about doctors in this area if I have any luck.
Jillian
23 April 2009 02:52 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:05:57

(Archived from laurasis - original forum)
laurasis

We are in Southern California.
23 April 2009 07:45 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:24:10

(Archived from deborahw - original forum)
deborahw
Hello, hello! I think I "heard" my name mentioned! LOL. I am so sorry that I have been absent lately from participating on my own forum! (My little girl had an accident, so we have just been dealing with surgery, etc. Happily, she will heal up and be just fine!)

Anyway, I can take a few minutes now and welcome you both in the manner that you deserve! :) It is such an amazing feeling once you have found the right mast cell disease specialist who can help you and turn your life around! So, we just need to help you both find that person! Jillian, it is nice that you have a doctor willing to help you, but we need to get you someone who really knows mast cell disease, because there are so many things that they can suggest to help you. If you bmb comes back negative, you could still have mast cell disease (like me, only it is called Mast Cell Activation Disorder by some and Idiopathic Anaphylaxis by other doctors). Also, depending on who did your bmb and where it was tested, it could actually come back with a false result. (I hate telling people that, but that is what I was told by Dr. Akin, who you probably know is a world renowned masto researcher.) Dr. Akin told me that there are only a few places in the US, that truly know how to test correctly for masto. Examples of these places are: Univ of Michigan (Dr. Akin's lab), NIH, & Mayo Clinic.

I can email Dr. Akin and ask him if he recommends anyone in your areas. Just to doublecheck: Laura -- you are in Southern California, and Jillian -- you are in Oregon. Correct? Anyone else need to me to ask about recommended doctors in a certain area? Let me know asap, and I will email Dr. Akin in the morning and see if he can help us out!

In the meantime, I would urge both of you, Laura and Jillian (and any other newcomers) to read the topics in my FAQ section if this forum to get you started in the right direction. We have so many helpful people here now, so if you keep reading, you will soak up all sorts of good tips and knowledge. That is the key secret to taking control of your illness and helping yourself get better -- educating yourself as much as you can and learning what your personal triggers are and how to handle/avoid/prevent them.

Welcome, again! :)
__________________
Feel well!
Deborah
23 April 2009 09:40 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:26:05

(Archived from jillian - original forum)
jillian

Hi Deborah, Thank you so much for looking into a doctor in this area. It would be great not to have to fly to Boston but I will if I have to. My doctor sent the BMB to Portland Oregon, Oregon Health & Science University Hospital. He said they would do the c-kit test but still, like you said they may not know how to do it correctly. Can they diagnose what it is without a "positive test" somewhere along the way? Is it a clinical diagnosis based on symptoms and other common health issues that other people have with mast cell disorders? Every symptom and health issue I have falls under mast cell disorder. I've been researching this for six months now and the more I read the more I know I have a mast cell disorder. I've kept an open mind and researched so many other disorders but I keep coming back to this. It's the only thing that makes sense! It describes me exactly! With the other disorders there's always a handful of symptoms I definately don't have and a ton of stuff I have that those other disorders would not cause. We've ruled out so many other possible things through miriad of tests. I feel like my doc thinks I'm "beating a dead horse" so to speak. I gave him the same health history I posted here and have tried to talk with him in more detail about what it is I experience on a daily basis but I feel like he still doesn't get it. Not because he's not a good doc but because he doesn't specialize in mast cell disorders. He wants a solid test result that says yes or no! I would love to talk to a doc that says "I know exactly what your talking about"! That's what I need. That's what we all need. Mentally and emotionally I think I will be in a much better place once I have a diagnosis. That can only help the physical stuff cause it's all connected. ;)
Thanks again,
Jillian
24 April 2009 02:43 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:27:38

(Archived from manuella - original forum)
manuella

Hi Deborah, Jillian, Triciag...

I just noticed a posting on the Canadian forum regarding a positive experience with a doctor working out of the university of Washington (believe it's in the Seattle area). I think Jillian is in Oregon, but let me know if i should check on the details for you! I agree, the closer to home you can find someone to help you with your condition, the better. I travelled all the way to Boston last year to see Dr. Castells, which was wonderful as she verified my MCAD/MCAS, but i've returned home to the black hole of masto patient care here in BC where they do not recognize or respect this diagnosis. But having said that, the trip to Boston was worth it in the fact that i was finally validated by Dr. Castells which meant the world to me after my 6-year struggle for diagnosis here in Canada. At least i know that i'm not crazy, even if all the docs here think i am!
24 April 2009 07:12 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:28:59

(Archived from jillian - original forum)
jillian
Hi Manuella, I would definately be interested in his name. I have family near Seattle. It would be a 5-6 hour drive and I could stay with them. That would be great if you can find out more. Is he a mast cell specialist? Is it the doctors triciag mentioned at Washington State? Forrest Hansen was one of them.
Jillian
24 April 2009 09:13 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:30:37

(Archived from anuella - original forum)
anuella

Hey Jillian,
A positive comment was written on the Canadian mastocytosis forum regarding this doctor, so this reference is not my personal experience, but seemed definitely worth sharing here for western US residents. The patient saw this doctor recently and he apparently has patients with mastocytosis/mast cell disorders and seems to be in touch and knowledgeable of the leading doctors/researchers in the US. His name is Dr. Wedner and his specialty is allergy/immunology. He is affiliated with the University of Washington. Here is a link to a webpage with some more info:

http://mednews.wustl.edu/sb/page/normal/163.html

Now, i've just looked back through some old paperwork of mine, and i was given this contact a few years ago by Nancy Gould (a wonderfully knowledgeable masto patient currently living in New Zealand but originally from the Seattle area). Anyways, here is another possibility. This doctor is a hematologist and specializes in myeloproliferative disorders/leukemia which tells me he may be an appropriate doctor for more severe/aggressive forms?

Dr. Maruo
Assistant Professor
Center for Hematologic Malignancies
Oregon Health and Science University

http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=10932

ps: As far as i'm aware the people Triciag mentioned are TMS patient support group leaders for their areas (Juanita in California and Forrest and Tari in the PNW). Definitely worthwhile calling them up for any further possibilities regarding information!)

Hope something turns out to be helpful here!
25 April 2009 12:49 AM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:32:10

(Archived from deborahw - original forum)
deborahw
That is correct: Forrest and Juanita are patients like us. I don't know Tari....
__________________
Feel well!
Deborah
25 April 2009 08:31 AM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:33:54

(Archived from orenep - original forum)
orenep
Hi everyone ,
I Am new to this forum... found it by luck while googling .I skipped over the intro part for now sorry i have more important things on my list what is being shared in this thread , a 'west coast doctor'.
I too am in a desperate search for one as close to the pacific northwest as possible for my 20 Yr old daughter. She was born with boulus <~~spelling Urticaria Pigmentosis and Diffuse cuntanous masto.. She was still being seen by doctors at Pediatrics northwest who treated her most of her life up until a week ago when she found out she is 5 weeks pregnant..

They wont see her anymore and dont know where to send her and we are in a complete panic because they told her she had to stop taking her hydroxyzine as it will hurt the fetus and they couldnt tell her what she should take in its place . Hydrox. has been one of the two maintenace meds that has kept her stable..

We had hoped of coarse she would be a lucky one and out grow this .. needless to say she hasnt so we have no clue whats down the road for her .. We definatly need a med team for this one .. Im really worried what we are going to do if she starts hiving out or a masto attack is triggered since its been a week since she has been on the hydrox. she is still taking her rinitadine.. She was having cramps and we took her to the ER and like always new doctors and not one that has even heard of mastocytosis .. Even more frusterating wont listen to me because im just mom and Emma is 20 now.

The immunologist my daughter was seeing was also pediactric and was good at contacting the docs at the NIH but now she is adult and pregnant it seems as though we are having to start all over with little time to spare .. :(

One thing we do know for certain with my daughter is she does not need the diagnosis she was already diagnosed years ago.

If anyone finds someone I too would appreciate the info. Like wise if Emma and I find someone before then i will pass this along to all of you ..

Thank you,

Corene Peek
Tacoma/Seattle

PS. Is the washington st. support group still together .. We had tried to contact them via email and no luck so far .. We use to belong to the group but lost our internet and all the contact info along time ago.
02 May 2009 03:18 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:35:15

(Archived from corenep - original forum)
corenep
Hi again everyone..
A update on finding a doctor I was just in contact with the Allergy/immunology dept at Virgina Mason Hosp in seattle Washington.
I thought i had remembered a name from way back while attending a NW support meeting and asked Emma's Ped allergist if he knew how i could find out .. I had lost the paper he had printed out for me and thru a week of digging hole's in my house a like a squirrel who forgot where it buried its nut I found the paper !!! The Dr. is David M. Robinson I gave them a call for Emma and they confirmed they have several mastocytosis patients and gave Emma a Appt for the 27th Because of the urgency!! Not only does he see masto patients but there is another dr in the clinic that also does !
I was really impressed as the receptionist wanted to besure that Emma give her obgyn when she see's him on the 21rst Dr Robinsons consult number in case he has any questions /concerns before she see's him on the 27th .. She said also that way if emma has issues before then Dr Mitchel can call him to make sure what is safe or not safe to give Emma .. man im hoping this one is the one!!
There was more but i will keep it short!! SO hopefully We found a NW doctor familair with this ..( i still have the to good to be true thing going on in my head , been a long haul raising a child with a rare disease )
oh also mean time if anyone hears of parents with babies that need a doctor in our area i highly recomend Dr Jeoffry Jacobs he has had a mastocytosis education with Emma and has been right on top of the tryptase levels and staying in touch with the NIH doctors for us when Emma was in trouble
:) CoreneP
Tacoma/Seattle
07 May 2009 06:43 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:36:53

(Archived from susij - original forum)
susij
Hello Everyone,
I am new to this forum and am so happy to have found it-lots of great information. I am looking for a mast cell doctor in California (if one exists!)-speifically Southern Cal. I've been looking over the posts and tried to call Juanita Anderson (listed above), but the number was disconnected. Can anyone help point me in the right direction? I've looked on the TMS site, but we don't have a support group listed for California.
Thanks for any help on this!
Susi
10 August 2009 01:16 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:38:20

(Archived fromfaithberry - original forum)
faithberry
You could ask mastomama (carla), she's in southern california and has a mast cell doctor. Just google mastomama blogspot to find her.
11 August 2009 08:32 AM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:39:42

(Archived from susij - original forum)
susij

Thank you!!!
11 August 2009 09:45 AM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:41:21

(Archived from csiii - original forum)
csiii

I've seen Dr. Gary Schiller at UCLA. He is the one that definitely confirmed that I have SM. He is the director of the Hematological Malignancy / Stem Cell Transplant Program. I saw him to see if I qualified for a Mastocytosis research program. I was referred to him once, but my insurance company won't allow me to go back. He is the first doctor I've met that actually know what Mastocytosis is. He may be the man you are looking for. My allergist in Redlands, Dr. Mabudian with Beaver Clinic, is learning about the disease right along with me. He has been consulting with someone at the Scripps Institute in San Diego. He is the one that has gotten me on the right cocktail of antihistamines and gastrocrom to control my attacks. Good Luck. I hope this helps. Dale
__________________
My best to all. Dale
20 December 2009 11:17 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:42:45

(Archived from amiann - original forum)
amiann
It's been almost a year since the last post on this subject. I have seen one dr so far regarding masto. I would LOVE to see another one for a second opinion. On what? not sure. I live in the Seattle area and was wondering if anyone has actually seen these drs mentioned above? Also, very interested in a support group here in the Seattle area. Anyone in this area? My dr. told me that I was 4 in a million. Wouldn't it be cool to have a map with pin points of where we all are?
__________________
Smile, it makes'm wonder what your up to!
09 October 2010 06:22 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:44:10

(Archived from brigittegriffith- original forum)
brigittegriffith
Hi Deborah! I would love to find a doctor on the west coast to help me deal with my autoimmune chronic urticaria. My doctor's here in Reno only accept symptoms of the disease to be flushing, swelling and hives, and if I don't have any outward signs, they say I'm fine when in fact I feel like ^&(&*!
I feel that there is much more going on...panic like symptoms and GI problems that could be connected tot his disorder. I would like to find a doc who knows more about it and can rule these symptoms in or as as far as being connected to the CU. If you have any suggestions I would greatly appreciate it!
Thank you,
Brigitte
30 November 2010 10:24 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:47:18

(Archived from jysmith - original forum)
jysmith
Brigitte,

Have you seen an endocrinologist? Can't remember if I mentioned it before, but with the amount of anxiety/panic you're having, I can't help but wonder about adrenal problems. That might be another thing to rule out, and maybe, if you get a good endocrinologist, that doctor might refer you to a masto specialist if he/she can't find anything endocrine. Just a thought.
__________________
Take care, Joan

*******
"I try to take one day at a time, but sometimes several days attack me at once."
30 November 2010 10:34 PM

Title: Re: west coast doctors
Post by Riverwn on 01/01/11 at 09:48:35

(Archived from bobkeenan - original forum)
bobkeenan

In Sacramento my Doctor is Dr. Rosemary Hallett. She has been treating me for about 5 years. I am the 3rd masto patient that she has had. She arranged for my blood, urine, and bone marrow testing. All done at UC Med center. Although some of the tests (c-kit) were sent somewhere else. She has been in communication with the NIH and also arranged for a visit to Stanford.
01 December 2010 03:16 PM

Title: Re: west coast doctors
Post by Susan on 04/26/11 at 07:54:39

I'm looking for a doctor in Northern California. It sounds like Dr. Hallet in Sacramento might be a possibility. So far I have only seen Dr. Michael Martin, an allergist in Santa Rosa. He is going to do initial testing for me, but I don't know what is next. He didn't even want me to make a follow up appointment, just told me to call a week after I had the tests done. I don't know if this is good or bad. I'm hoping he would refer me if it looks like masto, but what if he just drops it?

I also found the name of Dr. Jason Gotlieb at Stanford. He is a hemotologist and medical oncologist, says he works with mast cell disorders. Anybody heard of him?

I don't think I could survive a trip to the east coast now. I haven't been able to travel for the last five years, and can't imagine going to a strange city and having to get around, as well as manage any testing. If I can do it within a couple of hours drive, life would be much more manageable.

Any California folks?

Title: Re: west coast doctors
Post by Lisa on 04/26/11 at 13:19:49

Dr. Gotlieb is EXCELLENT Susan, but if you've got Systemic mastocytosis. I've spoken with Dr. Gotlieb and he prefers to work only with ALREADY diagnosed masto patients. He knows we're a lot of work to diagnose and he prefers to only treat those who really need him, those patients who have the neoplasm and preferably those who are aggressive or smouldering masto. However, you may want to contact him and ask him for who he might know of who could do a work up of your case for diagnosis. He should know who the doctors are who send him patients.

Lisa

Title: Re: west coast doctors
Post by Susan on 04/26/11 at 14:33:32

Lisa, that is really good news!! I was hoping Dr. Martin would be able to get me to the point of diagnosis, and then I would see if he refers me, or if he could treat. I was surprised that even though my appointment was scheduled for allergy testing, he immediately went to masto testing for me. So I am hoping he is OK. But contacting Dr. Gotlieb for suggestions is a good idea.

Doctors out here are thin on the ground for any type of treatment. I'm keeping my fingers crossed that one of these works out for me, if I have mast cell issues, that is.

Title: Re: west coast doctors
Post by Susan on 01/21/12 at 09:57:54

I want to add these doctors to this post.

I just came back from UC Davis, where I saw two doctors who know about mast cell disorders, and I know there are at least three more. I originally found them by doing a search on doctors, mastocytosis, and California. Several of these doctors participated in a paper called Mastocytosis, the Great Masquerader (http://www.ncbi.nlm.nih.gov/pubmed/16461996) and Contemporary Challenges in Mastocytosis (http://www.ncbi.nlm.nih.gov/pubmed/19639428).

I was supposed to see Dr. Eric Gershwin, who is one of the authors on these papers. For some reason, he was not in, but I saw Dr. Fatima Ali, who is an intern, and another doctor who was supervising, and only ran in briefly.

Anyway, Dr. Ali was VERY friendly, interested, and seemed quite knowledgeable. She talked to me a lot about what medications I am taking, and much more about how much I could safely take, and what concerns there might be. She went over the use of the Epipen much more thoroughly, not so much HOW, though she did do that, but also when. As I am a leaker (don't often have anaphylaxis), I have been very confused about when I should use it.

She knew about the new WHO criteria, and also about the proposed MCAD criteria, though they are not as big into the MCAD there. Doesn't mean they wouldn't treat necessarily, just they called my issue idiopathic for now. They were very emphatic that I do need treatment! Also, that even with my lower tryptase, that I need a bone marrow biopsy, as my GI biopsy shows signs, but the report was not clear enough to give an absolute diagnosis.

So, the doctors at UC Davis who know enough about masto to be involved in research are M. Eric Gershwin (http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=297&searc... ), Rosemary Hallet ( http://www.ucdmc.ucdavis.edu/search/faculty/biodetail.asp?bioid=881&searchtype=&... ), Suzanne Teuber ( http://www.ucdmc.ucdavis.edu/referrals/specialists/biodetail.asp?bioid=474&searc...), and the internist I saw, Fatima Ali (Allergy and Immunology).

The local PNW support group also gave me the name of Natalyia Kushnir in Berkeley. ( http://www.allergynk.com/index.html ). I did write to her to ask if she knows about MCAD, after calling the clinic and talking with their reception. The receptionist told me to email the doctor, and even gave me her email, but I never heard back from her. I may try again, as she is slightly closer than UC Davis, for me.

The docs at UC suggested I find a local hematologist, and talk to them about doing the bone marrow biopsy, so I woudl not have to travel. They even think a hematologist would know enough to be able to follow my treatment. I will have to see if that is true. However, they are well set up to do the testing at UC Davis, and would have me back if that is what I choose. There is also Dr. Gotlieb at Stanford, if I got an actual diagnosis based on the bone marrow biopsy.